Harmonization of psoriasis data collection is needed

[Fred]

There are so many psoriasis studies around that sometimes it gets confusing, and it's getting harder to get comparability and combinability of cohorts and data. This study suggests further harmonization of data collection is demanded.

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Background:
Safety and efficacy of new treatments are analyzed in clinical trials but their capacity to show potential effects of long-term treatment and more than short latency of onset is limited. To meet this challenge, patient registries (of treatments or diseases) collect prospective data of real-world patients in daily practice without tight selection of patients.

Objective:
The aim of this article was to identify existing psoriasis patient registries by published articles and evaluation of monitored treatment classes, patients, research questions addressed, and measurement instruments implemented.

Materials & Methods:
A systematic review of Medline (pub med) and Embase (Ovid) databases for publications on psoriasis patient registries, including cross-validation was conducted October 2015.

Results:
14 patient registries for long-term observation of psoriasis patients in real-world care were identified. Registries were established since 2005, the majority is located in Europe. The number of published studies from single registries ranged from 1 to 10. Most registries include patients treated by conventional systemics as well as biologics. The number of patients analyzed ranged from 35 to >12 000 patients. The publications mostly addressed safety issues or treatment outcomes, followed by baseline description, drug survival, predictor analyses, and treatment patterns.

Conclusion:
A variety of local, national, and international patient registries collect longitudinal data on (systemic) psoriasis treatment. The number of publications reflect the main registry objectives of safety and effectiveness, with additional therapy-related investigations being addressed as well. Based on the information from publications, the combination of data from these registries will involve many methodological challenges. To gain comparability and combinability of cohorts and data across registries, further harmonization of data collection is demanded.

Source: onlinelibrary.wiley.com

*Early view funding unknown.

[jiml]

It's a great idea and could possibly begin to happen as access to data gets easier, but I think it will be a long time before the various funders of the studies are going to pass over their data as a lot of the studies are funded by big pharmaceutical companies, who will be reluctant to share

[Fred]

It's a great idea and could possibly begin to happen as access to data gets easier, but I think it will be a long time before the various funders of the studies are going to pass over their data as a lot of the studies are funded by big pharmaceutical companies, who will be reluctant to share

Yes that's a good point, but if they could get them to run their studies with say similar numbers or objectives it could help with cohorts.

[jiml]

It's a great idea and could possibly begin to happen as access to data gets easier, but I think it will be a long time before the various funders of the studies are going to pass over their data as a lot of the studies are funded by big pharmaceutical companies, who will be reluctant to share

Yes that's a good point, but if they could get them to run their studies with say similar numbers or objectives it could help with cohorts.

Yes I am all for it the more knowledge sharing the better, let's hope that it works out and pooling of knowledge becomes a reality......I wonder who would fund it

[Fred]

I wonder who would fund it

I've been passed a bit more from one of our roving reporters.

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There was no external funding for this study, and the following authors gave the following conflict of interest.

Eissing L, Rustenbach SJ, Krensel M, Zander N and Spehr C are employees at the University Medical Center Hamburg-Eppendorf (UKE) and have no conflicts of interest to declare. Augustin M has served as consultant and/or paid speaker for and/or has received research grants and/or honoraries for consulting and/or scientific lectures for and/or got travel expenses reimbursed and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis including Abbott, Almirall, Amgen, Biogen, Celgene, Centocor, Janssen-Cilag, Leo, Medac, MSD (formerly Essex, Schering-Plough), Novartis, Pfizer (formerly Wyeth). Radtke MA has served as consultant and/or paid speaker for and/or has received research grants and/or honoraries for consulting and/or scientific lectures for and/or got travel expenses reimbursed and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of psoriasis including Abbott/Abbvie, Amgen, Biogen, Celgene, Hexal, Janssen-Cilag, Leo, Medac, MSD (formerly Essex, Schering-Plough), Novartis, Mundipharma, Pfizer (formerly Wyeth) and Sandoz. Naldi L has been a consultant for Janssen-Cilag, Novartis, Pfitzer, Abbvie and Menarini.

That doesn't answer you question, but it looks like the authors have some pull to possibly make it work.

[jiml]

Yes that's good although not funded research they certainly have links to the big boys who could pull the information together :